Abstract
BackgroundUnderstanding end of life preferences amongst the oldest old is crucial to informing appropriate palliative and end of life care internationally. However, little has been reported in the academic literature about the end of life preferences of people in advanced age, particularly the preferences of indigenous older people, including New Zealand Māori.MethodsData on end of life preferences were gathered from 147 Māori (aged >80 years) and 291 non- Māori aged (>85 years), during three waves of Te Puawaitangi O Nga Tapuwae Kia Ora Tonu, Life and Living in Advanced Age (LiLACs NZ). An interviewer-led questionnaire using standardised tools and including Māori specific subsections was used.ResultsThe top priority for both Māori and non-Māori participants at end of life was ‘not being a burden to my family’. Interestingly, a home death was not a high priority for either group. End of life preferences differed by gender, however these differences were culturally contingent. More female Māori participants wanted spiritual practices at end of life than male Māori participants. More male non-Māori participants wanted to be resuscitated than female non- Māori participants.ConclusionsThat a home death was not in the top three end of life priorities for our participants is not consistent with palliative care policy in most developed countries where place of death, and particularly home death, is a central concern. Conversely our participants’ top concern – namely not being a burden – has received little research or policy attention. Our results also indicate a need to pay attention to diversity in end of life preferences amongst people of advanced age, as well as the socio-cultural context within which preferences are formulated.
Highlights
Understanding end of life preferences amongst the oldest old is crucial to informing appropriate palliative and end of life care internationally
Within the New Zealand (NZ) context, the lack of attention paid to the unique aspirations and needs of indigenous Māori is highly problematic given that ‘partnership, protection and participation’ of Māori is enshrined in law
Māori are less likely to use specialist palliative care services than NZ Europeans, which may partly reflect a lack of cultural appropriateness of these services [9, 10], but little research has explored the unique preferences of Māori for end of life care
Summary
Understanding end of life preferences amongst the oldest old is crucial to informing appropriate palliative and end of life care internationally. Little is known regarding the preferences of people of ‘advanced age’, defined within the gerontology literature as those aged >85 years [2, 3] This knowledge gap is limiting the development of policy appropriate to the needs of ageing populations internationally [4] because, are the numbers of deaths in the oldest age group rising rapidly in most developed countries [5], and the limited research. Māori are less likely to use specialist palliative care services than NZ Europeans, which may partly reflect a lack of cultural appropriateness of these services [9, 10], but little research has explored the unique preferences of Māori for end of life care It is within this context that this paper reports research exploring the end of life (EOL) preferences of
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